The Lighthouse

                                                Coastal Empire Polio Survivors Association, Inc.

                                                                                                         Newsletter, January, 2007

          Shining light on post-polio health                                                                                     

   ____________________________________________________________________________

The President’s Message:  Happy New Year!

     We accomplished so much in 2006. We never imagined the out come would be so incredible when we set our goal to implement CEPSA’s purpose in 2006.

Here are some of the highlights:

• We extended the outreach area of CEPSA’s newsletter.
• The Phone Committee was expanded into a Care Team Program that would help to strengthen CEPSA’s support system for our active and inactive members.
• We started “S.O.S. - Sharing Our Strengths” small group and discussion time at our meetings.
• We included a 15 minute break during our meetings.
• A flyer was designed to help locate polio survivors, “S.O.S. - Survivors On Search.”
• CEPSA’s History Book project is well underway.
• Cheryl Brackin spoke about Post-Polio Syndrome at Rotary Club on two occasions, once in Darien, GA and another in Savannah.
• I spoke about CEPSA and Polio Awareness on WTOC 11 Mid-Morning Live on March 15th.
• CEPSA now has an amazing Website, thanks to Jim Veccia and his son Jim.
• The Health Data forms were designed and packets were distributed to CEPSA members.
• CEPSA partnered with “Everybody Counts Immunization Coalition to sponsor the 5th Grade Poster Contest, “Protect What You’ve Got - Get the Shot.”
• CEPSA announced the three winners of the poster contest at our September 23rd meeting and they each received a bicycle and cash prize.
•  An article in the Savannah Morning News “CloseUp” featured the poster contest and CEPSA’s projects. 
• CEPSA received grant money from Amerigroup Foundation to fund the “2006 Polio Education and Immunization Awareness Campaign.”
• As part of the 2006 campaign, CEPSA launched a Polio Education Multi-Media Competition for University students in Savannah. The entry deadline date is January 17, 2007. Scholarships will be awarded to the first and second place winners in the amount of $1,000 and $500. Awards day will be announced in February.
• CEPSA has offered “The Last Child, The Global Race to End Polio” documentary to the Universities to raise awareness of polio and to kick off the Polio Education Multi-Media Competition.                         
• The Historic District Navigational Map was researched, designed, published, and distributed to visitor’s centers, hotels, restaurants, CEPSA members and other special interest groups.
• An article about the Historic District Map was featured in the Savannah Morning News, “Where Sidewalks Don’t End.”
• CEPSA and the Historic District Map were featured in an editorial in the Savannah Morning News, “The Way Forward.”
• Dan Shehan was asked to be a member of the Disability Council of Savannah and to serve as Disability Awareness Chairman.
• CEPSA sponsored a Polio Awareness display at the following events:

      “Back to School Showcase” at Savannah Mall on July 29th.

      “Baby Fair” Brunswick, GA at the Brunswick Mall on September 16th.

      “Health & Wellness Fun Fair 2006” YWCA of Brunswick, GA on November 11th at the  

        Colonial Glynn Place Mall.

• CEPSA received a Certificate of Appreciation in recognition of valuable contribution to the “Health & Wellness Fun Fair” from the YWCA of Brunswick, GA.
• CEPSA was featured in the Coastal Health District Flu Shot Campaign.

God Bless,

Diane Davis, President

Time Change for CEPSA’s Meetings!

We have changed our starting time for CEPSA’s meetings to 10:30 and the ending time will be at 12:30.

Member Concerns

Eunice Newcomer                      Gloria Sullivan                     Cheryl Brackin

Tom Newcomer                          Lorraine Frew                       Tony Calandra

  Happy January Birthday to … 

  8 – Gloria Sullivan

10 --  Lorraine Frew

 14  --  Harriett Merritt

A special Thank You goes to the ones who helped make CEPSA’s

 9th Annual Holiday Banquet a great success!

Sandra Bath provided the table arrangements.

Diane Davis made the posters for the Grand Prize display and designed and printed the program.

Dorinda Duggan, a member of Ascension Lutheran Church, helped set up the banquet room on Friday , arrived at the church at 10:00 the morning of the banquet to assist the catering staff, and was the very last person to leave the church building that afternoon.

Marty Foxx arranged the catering service and her family helped with serving.

Beverly Jarvis made the arrangements for the use of her church Fellowship Hall.

                                       Betty Goff, a grand prize winner, accepts

                                       Peggy Cone’s print from Diane Davis  

CEPSA will be kicking off the New Year with our “S.O.S. - Sharing Our Strengths” small group and discussion time at our January 27th meeting.

Discussion Topics:

• What does being a member of CESPA mean to you?
• What can you do to help CEPSA make a difference in the lives of polio survivors, and their families, and our community?
• Goal Setting for 2007.

Hope to see you there! We need input from everyone.

 A Second Grant Request Is Approved

Sandra received this e-mail on December 22nd; it made a nice Christmas present for CEPSA.

 Dear Ms. Bath,

 It is with great pleasure that this e-mail message is being sent to you to notify you that your proposal submitted on behalf of Coastal Empire Polio Survivors Association, Inc. to the Adolescent Grant Fund (AGF) is one of eight proposals which have been selected to receive a partial or full award for the amount requested.   The AGF fund was provided by a partnership between Kaiser Permanente and the Georgia Registry of Immunization Transactions and Services. Your request of $2,000 has been granted in full.   Please expect to receive your check for $2,000 in the month of January, 2007.   As part of your agreement to use these funds in support of improving adolescent immunization rates in the State of Georgia, you will be expected to report back to this committee during the September 2007 Immunize Georgia Conference in Atlanta, GA your successes and lessons learned.   

 Congratulations,

Tom Judd

Kaiser Permanente

POST-POLIO HEALTH INTERNATIONAL AWARDS RESEARCH GRANT TO UNIVERSITY OF ARKANSAS TEAM

Post-Polio Health International announced that it has awarded a $25,000 research grant to a team from the University of Arkansas for Medical Sciences (UAMS), Little Rock. The researchers propose to determine whether there is a unique signature, or disease biomarker, in the immune system of individuals with post-polio syndrome (PPS) that would enable a more definitive diagnosis of PPS.

Biomarkers are biological measures found associated with specific diseases. They are useful

because they can assist in disease diagnosis or provide a means of monitoring disease development and

progression.

The researchers at UAMS recently detected the increased presence of a distinct immune cell

population in the blood of individuals with PPS but not healthy individuals, although the number of

donors examined was small. The detected cells represent a recently described subtype of T cells, known

as regulatory T cells (Tregs).

The research award from Post-Polio Health International will fund a small pilot study that will

determine whether development of PPS is associated with increased numbers of Tregs and whether the

Tregs found in individuals with PPS have unusual properties as compared with those in healthy

individuals.

“We are very grateful to PHI for their support of this research. Although the research is in its

very early stages and our initial results need to be rigorously tested in a much larger group of individuals

with PPS, a biomarker for PPS that can be potentially measured in an individual's blood should enable a

more rapid and more definitive diagnosis of this debilitating disease.” said Principal Investigator Dr.

Rahnuma Wahid, Postdoctoral Research Assistant, Microbiology and Immunology Department, at the

University of Arkansas for Medical Sciences.

“A definitive diagnosis of PPS is difficult because it is based on past history, which may be lost

or incomplete, or dependent on recall. The diagnosis is complex and unreliable because many

symptoms of PPS overlap those of other diseases including osteoarthritis, fibromyalgia, hypothyroidism

and a number of neurological conditions. Because available treatments are limited, finding a definitive

test for PPS would not only help with a diagnosis but would also help develop potentially more effective

therapies,” said Joan L. Headley, executive director of Post-Polio Health International.

Thanks to Diane Davis for providing this article from a PPH press release December 21, 2006.

  2005 Census Data Regarding People With Disabilities - Information Bulletin #186 (12/06)                                            

Many disability advocates need up to date statistics by State or county for people with disabilities. The 2005 American Community Survey can be found at http://factfinder.census.gov ; it provides a lot of useful current data. Here is a national summary of the data:

              Nearly 15% of the population 5 years and over (i.e., 40 million people) have one or more disabilities.

              For the population 16-64 years, 12%  (i.e., nearly 23 million people) have one or more disabilities.

             For the population 16-64 years, only 37.5% (more than 14 million people) of the disabled are employed.

             For the population 65 years and over, 40.5% (i.e., more than 14 million people) have one or more disabilities.

             For the population 5 years and over who have one or more disabilities, 21.1% (more than 8 million persons)

             are below the povety level (which is about $9,200 for a single person). Of all 5 years and over who are below

             the poverty level, 18.7% have a sensory disability, 21% have a physical disability, and 26.4% have a mental disability

As a comparison, for the population 5 years and over with no disability, 11.3% are below the poverty level, while for the same age group with one or more disabilities, 21.1% are below the poverty level.

Advocates should use this data to hold accountable public officials with respect to "Annual Plans" [for public housing and vouchers] and "Consolidated Plans" [for HOME and CDBG funds]. Make sure the public officials note the correct percentage of persons with disabilities who are below the poverty level. That information informs (or should inform) their planning processes. Without the correct data, people will disabilities will be shortchanged.
Thanks to Cheryl Brackin for providing this article.

Post Polio International Conference,

April 9-11, 2007 in Miami, Florida

The Post Polio Association of South Florida and the International Post Polio Support Organization will host a 2-1/2 day Post Polio International Conference – Partnering for a Better Tomorrow April 9 – 11, 2007, at the Radisson Hotel Downtown, Miami, Florida. Call the hotel (800) 342-7499 - ask for “Post Polio International Conference” block room rate of $119. Registration forms and fees to be available soon. Call (305)652-6216 or email postpoliomiami@aol.com with questions. See details at website: www.postpolioworld.com

 Post Polio group cruise offered after Post Polio International Conference. A 7-night cruise to the Eastern Caribbean aboard Royal Caribbean’s ship, Voyager of the Seas,” will depart Miami on April 14, 2007. If interested in joining them, contact Faye at: Toll free # 1-866-447-0750 or email to faye@travegroupint.com. Mention “Post Polio Conference Cruise” to get the group rate. Visit www.postpolioworld.com or email Maureen of the Boca Area Post Polio Group at BAPPG@aol.com to get more detail on how to accommodate any special needs.

Is Polio Still a Threat

Global Case Count - 2005: 1,749

Global Case Count - 2006: 1,874

CEPSA Officers for 2006

Diane Davis, President                      

Lorraine Frew, V.P.    

Janet DiClaudio Secretary                                                                

Marty Foxx, Treasurer

Members-at-Large –

       Dan Shehan

       Jim Veccia

Committees - Chairpersons:

Publicity - Cheryl Brackin

Newsletter - Sandra Bath

Mailing – Beverly Jarvis                                

Fund-Raising –

   Richard Graham

Hospitality –

  Tom & Eunice Newcomer        

   Dot and Bob Parkhurst

Phone - Lavonne Calandra

     Betty Goff

Videographer - Junie Parham